Do’s and Don’ts Learned from Steve Silberman’s NeuroTribes

By Jenny Palmiotto, Psy. D.

I’ve said it before and I’ll say it again, Steve Silberman’s NeuroTribes is a game changer. Through his examination of the history of autism, Silberman invites those within the autism community and further, our global community to change how we view and treat individuals with autism. Silberman’s voice is deliberate and poignant in his attempts to shift the paradigm from cause to care, where caring means both providing supports as well as actually caring about autistic people.

#1

Do:Recognize autism as a human experience that has been around forever as exampled by Silberman’s story of Henry Cavendish’s, scientist of the 18th century (p. 38-39). Understand that each person sharing this diagnosis term has their own unique story, their own trust, their own personalization of the diagnosis. In addition, each family member has their own relationship with the term autism. We need to be better at hearing each other’s differences and stand together in common ground. The word autism comes from the Latin word “aut” meaning self. It is paramount that we respect “aut” and others.

Don’t:Classify people by functioning labels (i.e. high functioning and low functioning). Autism is a heterogeneous disorder that brings both challenges and amazing gifts and a lot of stuff in between. Labels are simplistic and derogatory.

#2

Do:Help autistic people live healthier and safer lives across the life span. One primary goal is to help individuals develop a positive and healthy autistic identity. One way to assist in this process is to find neurodivergent role models. Neurotribes makes this easy as stories of self-advocates make up a healthy portion of Silberman’s work. For instance, Silberman features Alex Plank (p. 454-455), creator of Wrong Planet, the largest online community for autistic self advocates as a key force in creating a movement away from the disease model of autism. At Love & Autism, we align with Silberman, where autistic individuals lead us in shaping a new and positive definition of what it means to be autistic.

Don’t:Do not engage in fear mongering within this community. Unfortunately throughout this history, persons with autism have been painted as burdens to their families, institutionalized, abused, marginalized. Many in mainstream community still consider autistic individuals as being “lost” or “missing,” or requiring a cure. Persons with autism are not views whole persons, but projects. Those of you reading this blog are fully aware of that this type of thinking is ridiculous, ignorant and incredibly hurtful. But the sad truth is that people still believe this. Love & Autism is our effort to help in changing people’s view of what it means to have autism. Silberman will join forces with us to share his change message at 2016 Love & Autism.

#3

Do:Learn about autism’s heroes from Silberman. Celebrate and discover the rich history of autism’s first self-advocates, such as Judy Singer, who coined the term neuro-diversity, a a term that represents the core values of Love & Autism: A Conference with Heart. Denounce present day labels, just as you have with hateful words of the past like “imbecile” and “retard”. Find forward thinking professionals like Oliver Sachs (p. 316-319) and Lorna Wing (p. 341-346). Dr. Wing, a true hero of mine, is an example of important people who have worked to positively impact the autism community through fierce grassroots efforts and larger reforms. The late Dr. Wing shared dual identities as both mother to her beloved daughter with autism and professional that expanded the diagnostic criterion to include concept of the autism spectrum. Thus allowing for more individuals than before to seek support and services.

Don’t:Don’t hide behind science while dehumanizing individuals with autism. This only spreads ableist hate or minimize the messages of actually autistic people.

#4

Do:Embrace Neurodiversity. Silberman traces the roots of this powerful disability rights movement where neurologically different people are positioned as necessary not mentally handicapped (p. 450-454). Find your own tribe of people that fully sees you for you and loves you for all aspects of your identity. Surround yourself with those who will find inroads for areas of difficulty. Whether you are parent, professional, and/or self advocate, pave your own way. Find your own power. You can change this moment and the future by spreading more love and respect through every day actions, be they big or small. Create your own legacy of neurodiversity.

Don’t:Don’t doubt the power of our 1%. Silberman identifies that persons with autism make up 1% of society. That may not seem like a lot, but it is. We have collective power and need to form alliances. Many people have paved the road of our continued work like George Frankle, Julia Bascom, Ari Ne’eman, Jim Sinclair, Stephen Shore and Shannon Des Rochas to name a few featured in Silberman’s read. This list encompasses both self-advocates, professionals and parents because each voice is needed in order to sustain meaningful change.

#5

Do:Demand holistic, humanizing, respectful and dignified treatments where each person is seen as a person first, not a project. Where each person is heard and understood. Where the dominate message is “You are whole. You are loved” is sent in each and every interaction.

Don’t:Don’t forget the horrific abuses that were central to the pioneering approach to autism treatment. There are a few chapters that are truly heart wrenching. What is arguably one of the United States darker moments in victimization masked as medical attention is depicted in great detail. Scary, sad, and gut-wrenching are those parts within NeuroTribes where those of us within our present day autism community are acutely aware that this is a reflection of what is happening rather than a thing of our distant past. Children living in 2016 are still subjected to help that hurts. Although 30 years have passed, we must still remember those victims and all future victims to which our narrow view of disability has clouded treatment choice and opportunity. More importantly, we must question our current treatments to make sure that we are not causing any harm or trauma. We can always grow and enrich our care towards others.

#6

Do:Promote a more truer, richer version of autism. Find time to listen and learn from actually autistic voices. Come meet some of my personal favorites including Alex Plank, David Finch, Michael Tolleson, Kirsten Lindsmith, Chou Chou Scantlin, and Daniel Wendell. All of our speakers at Love & Autism are working to change how society views autism. Join us as we all work to create the change we want to see.

Don’t:

Don’t stand idly by while the potential of people with autism is missed in schools, communities, media outlets. Don’t let current practice dictate what our future and larger societal discussion should include.

#7

Do:Love your own neurology. Love your partner, child’s, best friends uniqueness. Love is available to all. Love with all your heart. Love your live right now, not what it might become. Embrace neurodivergent individuals not for who they will become, but for who they are in the here and now.

Don’t:

Don’t Limit yourself or your family member. Neurodivergent thinking does not mean that people are dumb, need help or need to be like their neurotypical counterparts.

Don’t Miss out on Love & Autism: A Conference with Heart. Here it straight from Steve Silberman.

******This blog represents my truth as I see it now. I am a constantly moving being who hopes to grow and learn from a myriad of sources. If there are ways that you see that I can grow by better representing you as part of a marginalized group, please send me a private email at [email protected] I am open to non-offending feedback. This blog was meant encourage diversity in though and growth within self through gaining knowledge.